Blog update 13/3/15
So, we are heading back into hospital for more treatment, as soon as possible.
Cameron, as you can imagine is extremely apprehensive! As our we, however if we wait on the blood results coming back it gives the antibodies a chance to establish themselves again in his brain and start another sustained attack. Starting the treatment right away we hopefully get a jump start on the bad boys!
We came away feeling quite positive today, our neurologist seems to have taken on board his recent brain function results, recognising now that there has been neurological damage in his brain and decided she wants to try and be more helpful. She is very much constrained with what she can do for us on the NHS, the IVIG is the height of it but we are thankful for that because if we were paying for it privately it would be £30,000 per round!!! However she is trying to source a way of drawing the blood here to ship to Copenhagen, it will be private and will cost but she says she would like to try. She is waiting on immunology coming back to her over the weekend as the blood draw needs to happen before IVIG starts.
Therefore we are up against the clock.
She has also agreed to consult with immunology on trialing Cameron on the super antibiotics Augmentin & Zirithromicin, it's not a yes but it's a step forward past the previous outright 'NO'. Some PANDAS families are seeing real progress on these antibiotics. And she has agreed to do the EEG, which should have been done last year at the very start when he was critical & untreated, but I suppose better late than never. We have come to the island this afternoon to blow the cobwebs away and be by the sea for a few hours :-)